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    • #19955
      Ashley Gregory
      Keymaster

      Hey all! 

      Summer is quickly approaching and this year’s going to be a hot one! 

      Many of us with LEMS have heat intolerance, I know I do! 

      Almost passing out from the heat was one of my first symptoms. Months later I learned that it was due to my small fiber neuropathy caused by LEMS. In my case, my neuropathy causes me to sweat much less than a “normal” person. 

      Does anyone else suffer with this problem?

      Is your heat intolerance also caused by small fiber neuropathy?

      Have you had a discussion with your neurologist about this? 

      Do you have any tips/tricks to share with us about what helps you in the summer heat?

    • #19985
      David1949
      Participant

      I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7 months of testing that began my LEMS journey.

      My only solution is to hibernate in AC in the summer months. I look forward to additional responses in this thread.

      David

    • #19989
      Ashley Gregory
      Keymaster

      @dpmitnick

      I’m sorry you struggle with this too!

      I actually have the opposite problem though, my sweat glands were damaged by LEMS so I don’t sweat much at all, I simply overheat!

      Both over and under-sweating are caused by dysautonomia though.

      Have you tried wearing a cooling towel around your neck or one of those wearable fans?

      Both might be options to help you! 🙂

    • #20004
      David1949
      Participant

      Ashley,

      I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.

      David

    • #20005
      David1949
      Participant

      Ashley,

      I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.

      David

    • #20068
      Ashley Gregory
      Keymaster

      @dpmitnick

      That’s awesome! What is the cooling bar like? Was it easy to get? Do you find them to be helpful?

      • #20077
        David1949
        Participant

        Ashley … see response below to DC. I have been successful with mine for three summers.

      • #20074
        David1949
        Participant

        Ashley,

        I am very pleased with the one I got two summers ago:
        <h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>Hands Free Neck Fan, BORKA Portable 360°Cooling Hanging Neck Fan USB Rechargeable Personal Mini Wearable Air Conditioner Fan.</span></h1>
        It isn”t available on amazon currently but it may be elsewhere.

        This is the closest I found to it and it is available on Amazon:
        <div id=”title_feature_div” class=”celwidget” data-feature-name=”title” data-csa-c-id=”9evthu-ckdznj-9aqvks-6stcd3″ data-cel-widget=”title_feature_div”>
        <div id=”titleSection” class=”a-section a-spacing-none”>
        <h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black)</span><span id=”titleEDPPlaceHolder”></span></h1>
        </div>
        </div>
        <div id=”bylineInfo_feature_div” class=”celwidget” data-feature-name=”bylineInfo” data-csa-c-id=”bigi5c-n5pmii-o58cdh-nac0c0″ data-cel-widget=”bylineInfo_feature_div”>
        <div class=”a-section a-spacing-none”>Brand: Eonthry</div>
        </div>

        • #20076
          David1949
          Participant

          Ashley,

          When I bought mine two summers ago I bought a product by Borka. It doesn’t seem to be currently available. This is the amazon link to a very similar product-

          USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black).  Brand – Eonthry.

    • #20071
      DCarpenter
      Participant

      I absolutely struggle with the heat, which exacerbates my weakness and fatigue. I tried to walk in heat and didn’t last a few minutes. I try to get out early, but tough to choreograph when meds kick in with walking early. I’ve thought about the neck fan but see mixed reviews about their effectiveness and placement— any feedback on brands? I have the profuse sweating symptom. Thanks for sharing information about this exasperating issue! Deborah

      • #20075
        David1949
        Participant

        This is vary similar to the one I have used for 2 years.

        It is available on Amazon (prime day sale today).

        USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black).  Brand – Eonthry.
        <div id=”bylineInfo_feature_div” class=”celwidget” data-feature-name=”bylineInfo” data-csa-c-id=”bigi5c-n5pmii-o58cdh-nac0c0″ data-cel-widget=”bylineInfo_feature_div”></div>

    • #20141
      Ashley Gregory
      Keymaster

      @dpmitnick

      Thanks for sharing that with us! I may have to look into getting myself one, especially since summers seem to be getting hotter each year!

      @lemsdiscussion

      Let us know if you ended up purchasing the fan and what you think about it!

       

       

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